all good things are wild and free

A stomach ache will never just be a stomach ache again

Ronan. I know I have Post Traumatic Stress Disorder. I’ll bet every parent who has lost a child has some form of it. It’s one of those things that we all have, yet nobody talks about it. You hear about people who have come back from war having it all the time as I’m sure they do. But what about the parent’s who have been in a war too? It just comes in a different form, such as fighting non-stop, the hardest you’ve ever fought for the life of your child, and then your child dies. Why are we all forgotten? We are thrown back into this world, expected to come out alive and stronger than ever because what doesn’t kill you, makes you stronger, right? I don’t know about that saying. I was a strong person before all of this. I think that’s another one of those sayings that makes it seem like we’ve survived this, so we must be stronger because of it. I don’t really think that’s the case. I’m surviving this because I really don’t feel like I have a choice. I am surviving this because if I don’t, everybody loses. I am not about to be a loser and let you down, along with countless of other people.

Here is just one example of my post traumatic stress disorder. Quinn started complaining of a stomach ache a couple of days ago. He’s been home with a sinus infection all week and has been on antibiotics. Last night, he couldn’t sleep because of his stomach hurting. He then point out a couple of small bumps around his lymph nodes. I kept him home from school this morning due to him saying his stomach was still hurting. I dropped Liam off, and the build up to my panic attack/meltdown was starting to brew. I came home with Quinn and asked him to show me where it hurt. He let me press down on his stomach and gave me a little wince when I hit the spot where it was hurting. I stayed calm. I fed him some breakfast and turned on a T.V. show for him. I left the room and went and sat at our kitchen table. I sat there for a good 10 minutes and quietly sobbed. I not only had myself convinced that Quinn had cancer (again, because he often does in my head every time he gets a headache) but I had a flashback to you and that one time you told me your stomach hurt. “My tummy hurts, mama.” I didn’t take you to the doctor. I didn’t know your stomach hurt because you had cancer. Or maybe it didn’t. Maybe you just had a normal stomach ache like kids get all the time. I won’t ever know. I will forever think that you complained of that stomach ache because of the mass you had growing in your tummy. I won’t ever forgive myself for not rushing you to the doctor and demanding a CT scan. I don’t care how naïve I was. Shouldn’t I have known that a stomach ache meant cancer? I know the answer to this is no. But it is still a hard pill for me to swallow.

I knew I couldn’t freak out with Quinn nearby. I sent your Mr. Sparkly Eyes a text through my tears. He called back instantly and I went out into the garage to talk to him because I didn’t want to let Quinn know how upset I was.

As soon as I picked up I said, “I know I’m not being rational. I know I’m being paranoid. But to me, a stomach ache will never just be a stomach ache anymore.”

He does what he always does best which is calmed me down. “Darling. You are not being paranoid or irrational. You have every right to feel this way. But just listen to me. It’s not cancer. I promise you that. His lymph nodes are swollen because of his sinus infection. That is what you are feeling. His stomach is upset because there is a ton of stuff going around. It is nothing more than that and you have to trust me. ”

“O.k. but I’m still taking him to see the doctor.”

“You do that. Please call me after, but I promise it’s nothing.”

I called and made an appointment with our doctors office. Dr. Campbell wasn’t in so I made an appointment with someone else. This caused me to lose it. I did not want to see anyone else, a totally different person who doesn’t know our story and all we have been through. I don’t want to have to explain why it is that I am at the doctor’s office for something as minor as a stomach ache. I pictured myself having to say, “His little brother died of cancer… so that is why I look like a crazed lunatic.” I couldn’t do that today. I am so sensitive to this now. I am lucky enough that your Dr. Campbell is so compassionate and has become close enough that I was able to send her a text message, telling her what was going on. She offered to come in on her day off, to check Quinn out. How unbelievably nice is that, Ronan? She acted like it was not a big deal, but to me, it meant everything.

We got to her office and she was there to meet us. She did the whole feeling his glands, asked him some questions and then had him lay down on the table so she could feel his stomach. After a very thorough examine, she came to the conclusion that it is the antibiotic that he is on, that is causing his stomach to hurt. She wrote us out a new prescription. I thanked her for coming in on her day off. I will never forget that. Ever. It goes down in my books as one of the nicest things ever. I felt better after leaving there. Your daddy did, as well. He was panicking, too. Life for us, will never be the same. We will never be naïve parent’s who dismiss something like a stomach ache. I hate this world so very much. I wish I lived in the world where a stomach ache was only just a stomach ache. I miss that world, so very much. Of course you know I came home and threw up everywhere. It’s my signature style, yo!

Dr. Sholler is here. I picked her up for the airport tonight. She is so very excited to be running for you this Sunday. It makes me smile that she is doing this for you. I can’t wait to spend some time with her this weekend.

I love you, Ronan. I am beyond beat tonight. I miss you, I love you, I hope you are safe.

xoxo

P.S. A little side note. I have so many people that do so many amazing things for us. (i wish i could hug all of you) I was at Becca’s tonight and she had a few things for me that some people have sent. There is the sweetest girl, who is making the cutest necklaces. She will make whatever you want on them, but she has been making a TON of Ronan things. If you want something, please check out her stuff here. I am rocking the most adorable necklace. The part you can read says, “Have a nice day.” The part you can’t read, and only I know about says, “you fuckwad.” I have seriously been laughing about this necklace all night. Clever little thing, you. I adore clever. She made a ton of stuff for the marathon. Thanks. You are darling and made my night. xoxo

Maya, I have tried so hard to get the word out about the
petition. I find it beyond ridiculous that as many people there are
who read your blog, you still don’t have all the signatures you
need. Ronan opened my eyes to this monster, and even though I may
not be able to donate money, I am trying other ways to raise
awareness. I hope others will open their eyes and take a minute to
sign. It will make me sick if it doesn’t reach the goal. Sending
well wishes to your Quinn, and lots of love to you and the whole
family. Ashleigh

I fully believe that parents who lose children often have PTSD. I know my mother does. I am glad you are so close with dr Jo, because she is doing a great job shedding light on this for some reason taboo topic.
Love the new sweatshirt, btw 😉

I hope Q is feeling better soon. You have such amazing people in your life; even your doctor is incredible. I guess this is all Ronan’s legacy to you…he made sure he left you equipped with the people who would be able to get you through this. Even so, the fact that you are able to keep going, that ANY parent is able to keep going, is the most amazing thing. The human spirit can be so beautiful.

My daughter was diagnosed with Wilms Tumor shortly before her 4th birthday (stage 4). She layed on the couch for three days before she was diagnosed with a bellyache. We did take her to the emergency room the second day and they told us she had some poppies that needed to move so we should make her walk as much as possible…so we did. We could have never imagined she had a monster growing and spreading in her tiny belly. There is never a time she complains about a bellyache/headache anything now that my world isn’t turned upside down.

Take care of your family ! Your so amazing Maya !
Ro is all the time in my mind, I like to speak about him but I don’t like to speak about childhood cancer … I have to and I do it !
Hope Quinn is feeling better !
Love you and love Roro to the moon and back

Maya–I totally understand your PTSD panic attacks, as I have suffered from them since my daughter was diagnosed with cancer. I will tell you, It Does Get Better, as far as not “losing it” as quickly when something comes up. But we are still super cautious and as you said, never naive again. I am two years out from her diagnosis and I am finally feeling a little calmer in general. Yes, I wish I still lived in the bubble of Nothing Like that Could ever Happen to my Kid. It must make life so….EASY. I’m so sorry for your anxiety, but it certainly is understandable. PS I take 1/2 of a Xanax once in awhile when I feel a panic attack coming on, and it really helps. It’s better than 2-3 hours of utter misery. Hang in there Maya! And thanks for sharing your journey with us.

Hi Maya. You are such an inspiration!
You probably get inundated with news about all the children taken by this awful disease but have you heard of Jamie Inglis in the UK? He has sadly just died, from an infection after being declared free of neuroblastoma. His Facebook page is:https://www.facebook.com/keepjamiesmiling

I tell you this because his parents have been monumental fundraisers and intend to keep raising funds for other children and families suffering from this. They are in the UK and you are in the US. You could link up your publicity and take over the world. Strength in numbers. Beat this thing!!